The families of children with Rhizomelic Chondrodysplasia Punctata (RCDP) gather in Leesburg, Alabama for an annual conference in June. RCDP is an autosomal recessive form of chondrodysplasia punctata characterized by defective plasmalogen biosynthesis and impaired peroxisomes. 'Rhizo kids' have shortened proximal limbs and severely disturbed endochondrial bone formation. Fewer than 100 children worldwide have the disease, and for most, the disease is terminal within the first few years of life. Photographed on assignment for The New York Times, the published article can be found here.

Hannah Peters, 23, writes on a balloon in preparation for a balloon release. The mood this year was excited by the prospect of a clinical trial for a drug that many families believe could help their children.

Jude Peters, 14 months, on the final day of the conference.

On the final day of the RCDP conference, all the families pose the attending children together for a photo.

Makenna Loyd, 18 months, is examined by the doctors in one of the homes rented for the conference.

Jonathan Bedford carries his daughter Marley, 5, who has RCDP, through the resort where the conference is held.

Nicole Guenther, 8, is one of the oldest children with RCDP at the conference. Her family traveled from Manitoba, Canada to attend.

The families of children with Rhizomelic Chondrodysplasia Punctata (RCDP) gather in Leesburg, Alabama for an annual conference in June.

Sullivan Peters adjusts his son's medical equipment.

During the conference the families have the opportunity to have one-on-one appointments with the three specialist doctors who attend the conference. The doctors provide consultation as well as record data and measurements for a database. The idea behind the database is to provide families with an expectation of what is "normal" for their child, since there is very little research on the condition.

Theresa Tofel swims with her son Aspen Tofel, 4, at the resort.

Dr. Nancy Braverman, MS MD, Associate Professor of Human Genetics and Pediatrics at McGill University Montreal Children's Hospital, is recorded by one of the parents as she gives medical advice.

Dr. Nancy Braverman, MS MD, Associate Professor of Human Genetics and Pediatrics at McGill University Montreal Children's Hospital, examines Jude Peters, 14 months, at the conference. The families of children with Rhizomelic Chondrodysplasia Punctata (RCDP) gather in Leesburg, Alabama for an annual conference in June.

Dr. Bober reviews an x-ray with a family at the conference.

Jude Peters, 14 months, has his head measured.

Jeff Cirner holds his daughter Jordyn, 9, up to a large fan so she can enjoy the wind under the dining tent at the conference.

Marley Bedford, 5, is measured at the conference for the database of measurements and statistics the Dr. Bober is compiling.

Ashton Collins holds her nephew Jude Peters, 14 months, who has RCDP.

Jeff Cirner and Mindy Lee hold their son Jake as he celebrates his thirteenth's birthday at the conference.

Tracey Thomas, who lost her son to RCDP, but still organizes and participates in the conference, holds Makenna Loyd, 18 months.

Hannah Peters holds her son Jude Peters, 14 months, on a boat ride at the conference.

Marley Bedford, 5, looks at a photo on her grandfather's laptop. Marley is slowly going blind as a result of RCDP, a symptom many RCDP children share. Crystal Bedford, Marley's mother, hopes the new drug for these children could potentially stall her blindness.